Heath's Journey 7/11/11

mujul79's picture

Plan Update:
April 28th Pulmonologist vist (this well and no med changes)

April 29th Genetics (all his blood test came back normal and we well be doing more testing in 2 years, they think by looking at him that he is on some beckwith wiedermenn spectruim) Pedi is setting him up with and US of organs every 4 months now because of this too.

May 2nd hearing test (was cancled)

May 9th A&T surgery (It went well he had some issues with pain after and did not want to sleep in the crib over night so we did pull an all nighter and he cried every 4 hours for meds. I was thankful for a good staff and a playroom. Once we got home he took a good 10 days of not eating well and needing meds. ENT also put tubes in his ears at that time because of fluid)

May 20th Heath had his AFO fixed (on the 25th we had to get them readjusted)

June 2nd the school came out to an evaluation of him to see what services he will get in the fall.

June 8th Sleep study (we go back for results on July 14th)

June 9th ENT visit (this went well and he is all healed from surgery)

June 10th Hearing test (this did not go as I figured it would they did testing with a head set and toys so we are not sure how good the results are, we went back for more on June 13th and results so that he has normal haring for his age???) After talking to the pedi she agrees his neurosensory loss would not get fixed with tubes so we are doing another ABR on Aug 16th.

June 27th MRI of his spine (this day went well he did cry after and was sluggy all day but that's expected)Results said his Chiari is at 6mm on both sides, and this is the part that I don't like the Nero S nurse called back and said that his Chiari is "stable" and not to come back for a year. How is is stable if it chaged from 2mm to 6mm and they are not dealing at all with the fact that he is still having syptoms??? After the sleep study results come back on July 14th I plan on making a stink of a phone call if the apena did not clear up with the ENT surgery.

June 28th he had testing on his hart (EKG, chest x-ay and US where all normal)

July 4th New baby is due (Simon Emmett Prince was born at 11:36am on July 2nd)

July 11th Heath's School meeting (He got into the hearing impaired program!!!! This is huge news we where fearful that the last hearing screen may mess up his placement but the school was supportive in looking at his history and use of ASL and aids and put him into the place we think he needs to be :) )